Julio "Jules" Mastro and Victoria Aguilar

Recorded February 15, 2020 Archived February 15, 2020 38:49 minutes
0:00 / 0:00
Id: mby019659

Description

Julio "Jules" Mastro (69) talks with his friend Victoria Aguilar (35) about living with HIV for many decades, losing many friends, a brother, and chosen gay family to HIV/AIDS. The friends also talk about the various HIV/AIDS activism groups Jules has spearheaded and contributed to in Fresno and beyond throughout the decades.

Subject Log / Time Code

JM describes living in San Francisco when he found out about HIV and AIDS and the possibility of death among gay men.
JM describes being part of a study about what now would be called HIB as a result of having swollen lymph nodes.
JM describes finding out he had anal rectal cancer and that he was HIV positive the day before his birthday.
JM describes losing his brother, who was also gay, to AIDS and wanting to keep his brother's AIDS activism alive posthumously.
JM describes the various activism groups that he was/still is involved with, along with some social and support based groups.
JM describes his HIV progressing but still wanting to keep his activism group alive and it still is, called "The Living Room" in Fresno.
JM says he is the last one of his original gay family who is still alive.

Participants

  • Julio "Jules" Mastro
  • Victoria Aguilar

Recording Location

CMAC

Partnership

Partnership Type

Outreach

Transcript

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00:00 Victoria eye Jewels Saturday, February 20th 2020

00:08 And here we are in Fresno and the storycorps booth here, and we're going to have a 40-minute discussion.

00:17 Till I'm 70 years. I'll be 70 years old in August that 69 years old right now.

00:23 My name is giulio Jewels Mastro's. Everybody calls me Jewels. My name is Victoria Aguilar. I am 35. It's Saturday, February 15th. 2020 Fresno, California is where we are and we're friends now. I would say I'm doing this for a while a family owns at your house. So I think you know we crossed a good lawyer. So Jewels we are here to talk about you or your AIDS awareness advocacy. So if you don't mind, can you talk about why it's important for you to have your story recorded?

01:13 I was around looking San Francisco actually when we found out that there was a strange disease that was killing gay men in large metropolitan areas, New York, San Francisco, Los Angeles.

01:31 Didn't know where it came from. They didn't have a name for it.

01:36 But I can vividly remember watching it with my roommates in San Francisco. And the story said there's a possibility that many many many gay men will die.

01:51 And we thought

01:53 No, that is a bunch of hype.

01:59 I guess later on in 81. I was a wine salesman. I was working retail of time as a wine manager in San Francisco, and I had a lymph node on my neck that had popped up at the same time. My younger brother Frank had moved to San Francisco before I didn't use also gay, you know, we were fortunate. We we told our parents first generation Italians from Fresno and they were just really supportive of great about it. But

02:38 I had gotten I got this lymph node, and I went in to Mount Zion Hospital in San Francisco. And I had it removed and I had a little patch on my neck. And one of my good customers at the wine shop was a physician at the University, California, San Francisco.

02:58 He came in me said what's that? And I said nothing. I said I had a lymph node removed.

03:05 She said, you know.

03:08 I'm going to give you the number of a doctor at UCI, like you like you'd have you give him a call name Donna Abrams.

03:15 What what's going on nothing? He's just call him. So I called Don Abrams and this in 1981 and he had a study group going gay men with swollen lymph nodes.

03:35 And he said why don't you come in? I want to talk to you and examine you and we'll see if you're appropriate to come into the study. There was two studies going on one person San Francisco and one was in, New York.

03:50 So

03:53 I went in went to the study it lasted a couple of years. They did all sorts of Investigations True Blood that public health nurses out to our homes.

04:05 And we still didn't have.

04:11 Identify identifying factors as far as what was going on at the time. They were calling it grid gay-related immune deficiency.

04:21 I kind of put that in the back of my mind, you know what they say is denial is not just a river in Africa.

04:31 And went on with my life in the meantime.

04:37 People are starting to get sick. They were fine. You see them at all of a sudden you heard they died.

04:45 And these were young healthy men.

04:50 Still we were pretty much in denial.

05:00 Soap for younger Generations that. Can seem monolithic and abstracted. Can you talk more about some of the emotions that we're going to the community having their friends a struck down by this disease? What was that? Like, they stop allowing gay men to donate blood.

05:24 So all of a sudden you couldn't donate blood.

05:29 Consequently lesbians began donating blood for gay men

05:38 I always like to say AIDS was the worst and the best thing that ever happened to the gay community prior to that lesbians and gay men were.

05:51 Totally on opposite ends of the spectrum

05:54 Butts

05:57 AIDS brought the two groups together. It was lesbians that were caring for gay men that were sick you many times people's families disown them.

06:14 And like I said, as I said people were getting sick and dying they would just get sick one minute and they died. I think it was about 84/85 with the HIV virus was actually a identified.

06:32 The word any medications available

06:35 Two people just weren't testing because they didn't want to know.

06:41 Same time, they close down all the bathhouses in San Francisco because the disease was spreading so rapidly.

06:52 Concurrent with that we started to see outbreaks outside of the gate community haemophiliacs or becoming infected with HIV and AIDS haemophiliacs.

07:10 As you know are there they don't their blood doesn't clot. So there's a thing called factor, which is made up of blood from many many different people to

07:22 To produce produce this factor which will which has a property to it that helps clotting stop all that very factor that was saving their lives was also what was infecting them with HIV and AIDS the other group that we started seeing a lot of cases in was ejection drug users reusing reusing needles and infecting passing the virus on the that way.

07:52 Finally in the cellars of the wine business. My brother came back to Fresno in 87.

08:03 In 88 the company, I work for 1 to open the Fresno market and they knew that I started out here and they asked me if I'd come back here to Fresno I did.

08:16 About

08:20 Oh, she must have driver's back my brother announced.

08:25 That he was infected with HIV virus.

08:30 A couple months later. I had some surgery. I was having a problem and I had some surgery and a friend of mine talked me into getting a HIV test.

08:47 Prayer that did this. Of time there weren't any medications available to people with HIV and there was a group called act up.

08:57 Act up was I guess what you would consider radical activist that they were known for their antics of chaining themselves to pictures of buildings, but they went up against the FDA to to fast-track these drugs that are being developed by pharmaceutical companies to get him released.

09:22 At any rate. I had I had not gotten myself tested. I you know had left that clinical study behind and when I went in for the surgery, my friend said get yourself tested that now we have a ZT.

09:45 I said, okay, so I got tested.

09:49 Had my surgery went on my Merry way surgeon called and said

09:57 Come in and see me left a message on my answering machine. So I didn't and then she called and same friend that told me to get tested was.

10:09 My roommate here in Fresno, I came home. His hands were on his hips and he said your surgeon called and she said be in her office at noon today.

10:22 I was like, okay. He said you better go to okay, so I went and it was August 16th.

10:32 August 16th, 1989 not 88 89

10:38 In 88 beginning of 89 we found out Frank was hiv-positive have my timeline a little mixed up here.

10:47 So August 16th was the day before my 39th birthday.

10:51 I went in and I was told that I had anal rectal cancer and I was hiv-positive. Happy birthday.

11:07 Mine's devastated. I mean I thought I was going to just die immediately.

11:14 I told people about the cancer. I really didn't tell anybody at first about the HIV.

11:19 Was there still of stigma at this point to the hospital nurses would put Downs on gloves on masks on trays? What would be delivered by people fully and gowns and masks and gloves anybody that came you basically if you were in the hospital you're basically isolated because people are so afraid of acquiring HIV it was a lot like what we're seeing seeing today right now real time going on with this coronavirus people were scared to death.

12:08 People wouldn't even not they're telling employer that you were hiv-positive. It was just

12:19 It was just very surreal me.

12:22 People were dying all the time. I was happy to get on San Francisco Because by the time I left San Francisco so many people had died that I've seen ghosts on the streets.

12:38 Interesting me enough when I'm still in San Francisco. My brother Frank has become active in the HIV/AIDS Community here in Fresno, and he asked me if I could donate a case of champagne for some fundraiser. They were having champagne.

13:05 In

13:08 So in 89 I finished my chemo and radiation treatments.

13:14 I went back to work. I started taking AZT.

13:18 And then

13:23 Frank's birthday is April 3rd right after his birthday. He got sick and turns out he had pussy sarcoma, which is

13:35 Cancer mostly like a skin cancer basically seen in older prior to HIV/AIDS Racine basically in older men for the Mediterranean area, but kaposi sarcoma was one of the biggest dick infections. We started seeing in with HIV AIDS.

14:04 Frank was admitted to Saint Agnes Hospital.

14:08 And spent six weeks there.

14:13 Turn the daytime my parents and an answer mine were there all day long with Frank he would get the fused and Frank was very very bright. He'd also prior to go in the hospital him. He have been working on the First Resource directory for people with HIV AIDS here in Fresno calls. It's nice to know it was clever ation that he was doing the tootsie bar who is the program director of the AIDS program that they have the Saint Agnes Medical Center.

14:48 Frank

14:52 Passed away on June 13th of 1991 at the age of 37

15:01 My brothers and I would switch spend the night with picture and spending the night there at the hospital. We work it in the daytime my father Little Italian plumbing contractor from Fresno.

15:14 Which

15:17 Freedom wipe them

15:19 Do everything.

15:21 And without

15:23 Batting and I miss is Sunday. Love to Son. We are fortunate our parents. Our parents were very good to us live like many many parents out there with people.

15:36 Gay children or especially had people children living with HIV and AIDS.

15:44 Anyway, Frank passed away on June 13th.

15:50 I was like a

15:53 Ben police piece of glass about to shatter. It's about all I can really explain about how I felt everybody went through emotions. Frank's death really hit me hard.

16:09 And

16:11 I kind of wanted to do something.

16:15 To keep up his aides act activism.

16:19 I've never really been an octopus say I've been a wine sales but I like to party like to have a good time. I like to do what I like to do and

16:30 And for the first time in my life, I think I really

16:34 Something really hit me.

16:36 I am my doctor retired me.

16:40 Hi.

16:43 After going to the cancer and the HIV diagnosis and all that. I was I was traveling back and forth to San Francisco to Stockton down to Bakersfield all over the place and I thought I didn't have the stamina to do all this traveling so I had gone over to

17:02 State of California Department of rehab see if I could get some retraining some different direction and I was told there that because of my HIV status. I was not eligible says I'd only be alive for another year to

17:24 And this is following Frank's passing.

17:29 That's what I applied for.

17:32 Besides you apply for Social Security disability.

17:37 And I did.

17:42 I was denied.

17:44 So I'm back to that counselor State rehab and I said remember me. He said yeah and I suggest would you?

17:53 Write me a letter for Social Security disability stating.

17:58 Why I'm not eligible, so I sent it back in with my request for re-evaluation on the Social Security and I was approved right away.

18:10 In the meantime I had started doing some I think the volunteer classes at Central Valley AIDS team and I was doing a little volunteer work and executive director there Catherine. Caulkins asked me to go to an HIV care Consortium meeting, which I really didn't know what it was all about night. I showed up in a pair of shorts and t-shirt and flip-flops and there's all these people in coats and ties and every time I tried to say something nobody paid any attention to me.

18:45 I thought okay the next month I showed up but it couldn't I all of a sudden I was electric chair of the HF Fresno County HIV care Consortium and put on the board of directors of the regional HIV care Consortium, and I had to pretend that I knew it all the acronyms were that they were talking about that was 1991 was the first year we distributed Ryan White funds and do you know who Ryan White was Ryan White was a young student from Indiana who acquired HIV he was hemophiliac.

19:29 And he wasn't allowed to go to school after that and he I think he did some sort of remote schooling. They didn't really have the computer setups that we have today, but he stayed home and was schools from home Ryan White's passed away at the age of 16 in Indiana and his mother Jeanne White

20:00 Did a lot of activism?

20:03 But the Ryan White act which funds care some some some care services for people living with HIV and AIDS was enacted by Congress and was named for Ryan White. He was a brave young man, and he really Shine the Light on HIV AIDS and let it be known that it was not just a disease of gay men.

20:33 So Ryan White funding came around? Like I said, I was the chair of the HIV care Consortium here in Fresno County.

20:43 Writing on the board board of directors of the regional and so 91 was the first time we we funded projects. We funny things like case management refunded things like

21:02 I just bust open his food.

21:07 At the same time Harper came around with his housing opportunities for people with AIDS which allowed us to House people and give people people in the Emergency Shelters. There were a lot of people living with HIV. They were homeless do we do a lot of different things with the monies. We kind of got busted by the state filter in Fresno County each agency that existed here had its own kind of thing that they did without each agency. The Continuum of Care would not have worked as far as providing services. So when we issue the RFP the course these agencies all applied. It went before RFP review panel, the RFB review panel would send it back to us to to find and then we sit around the table and say, okay. I don't need that much of this category, but your light on this over.

22:07 So we trade trade money back and forth State Department of Health Services that you can't do that you just get to the exit so we had to figure out a different way to to do it. But but we finally had some fun previous to that. It was all Volvo lose all volunteer. Whatever monies we could scrape up from local organizations, which is wasn't a lock in Fresno because because as you know, we are a pretty conservative area with a lot of faith-based organizations that many are just not very welcoming to

22:48 Those people something else have to say about Anne Frank died. We had done we're going to have a gun.

22:56 Memorial service for him at our Parish Church Catholic Church here and waited members forever. My parents were married in the church and

23:09 Priest made the remarks. Yeah, I really don't want these kind of people in my church.

23:18 So last minute we moved the service to somewhere else.

23:22 That's the kind of attitude that was going on here. And that's why people were hiding and that's why people still hide if they sometimes hear the ice. It's better here than that. It was back then but it was terrible then.

23:39 I

23:41 I just kind of accidentally got into this activism. I mean, like I said, I put a coat and tie on some people would listen to me and then they elected me share of the whole organization. After that. We had things like the Mother's Day run for HIV. And then the State Office of AIDS asked me to be to be on their working group and we wrote the education prevention and care plans for California, and I've spent seven years on that group. I was part of a group called open heart early years and Open Hearts.

24:23 Was a group of

24:25 Amen, that's got tired of sitting around in a circle in a support group and talking about how miserable their lives were and decide they still wanted to get together but more but have more of social interaction with each other.

24:41 So we started meeting at someone's house every other Wednesday and we would rotate.

24:50 Would bring

24:53 Something your buddy bring something your snack and something to drink a soda would do things like watch movies. It's Halloween. We have pumpkin carving contest with baked Christmas decorations at Christmas time. Do whatever we did Thanksgiving one year. We had I made Thanksgiving dinners and delivered them to two people and their homes.

25:20 And

25:22 We became more than a social group. We became.

25:26 Friends since we became really recognized as a model of of of how people that are affected.

25:41 With something

25:44 Can also

25:46 Be the answer to 2 dealing with that issue. We're sorry. She was HIV/AIDS lighting the experience to all these people that your brother had with your family you made sure that was in that second level of Devastation of having isolated. It sounds like it wasn't just me. I mean there was there was a lot of us II guess I was one of the there was maybe half a dozen of us inside the group. There were met with the movers and shakers. I suppose we started in those days people weren't online.

26:31 Then people didn't necessarily have cell phones to text people or anything. But we have is this thing called the telephone and it was and you were Tethered to the telephone landline. So every two weeks.

26:45 Whether you can just a 1 meeting or you came regularly to open heart you would get a telephone call from from one of the four or five of us that would make those phone calls every other weekend. We would check in with you tell you where the next group Gatherings at. And while we were at had you on the phone. We also check in with you as far as how you were doing. What was going on with you. Is there anything you need?

27:16 And it was a very cool thing you begin with very cool thing.

27:24 I became very very ill in thought. I had a partner. My partner died in 94 June 11th of 94. My brother died on June 13th and 91 Jim died on June 11th. 94 four years almost exactly four years apart.

27:50 Wyndham

27:53 Where was I when Jim died?

27:56 Look what I found myself still there and I and I was doing pretty good. I mean it hit me hard, but I moved on I had all my work that I was doing all the HIV work volunteer work that I was doing in and then in

28:16 December of

28:20 94 hours in San Diego at a office of AIDS working group meeting and I woke up one morning and I had a purple spot on my chest.

28:33 And I said, oh crap.

28:36 Kaposi sarcoma

28:39 I went down to where we were having breakfast at and there was a doctor there that was on the working group and I said

28:47 Can I talk to you?

28:50 What do you think?

28:52 And she said I think you need to go see your doctor friend since that's what I thought. Okay. Thank you.

29:03 In June of 95 is hot hot hot.

29:09 Olsen I just had the chills. So I put on my bathrobe and I went out and sat in the sun is about a hundred degrees out there and just freezing and I called Judy Judy bar who is program director at age for them say that to the I am freezing. I don't know what's going on.

29:30 And she said I'm going to call you doctor cuz she called back. You said you're being directed that it to Kaiser.

29:38 I just go in there and they got a bit of dead waiting for you.

29:45 I was put in isolation.

29:50 And I started losing weight. I would from about 170 lb 220 lb in

30:00 Matter baby 6 weeks

30:03 Obviously not that week now and

30:10 I had to give up my chairmanship of the HIV care Consortium.

30:17 And I got so so then anyway.

30:24 Things progressed I just said most of the open-heart members had passed away. So I decided

30:32 I didn't want to see open heart go away. And I talked to a friend of mine was a Catholic nun. She said I tithe I could tie $500 a month to you if you want to start something. So we started living room which on April 1st April fools day, December 1st 1996.

30:55 You're in Fresno, which is still going today and started out as a 12 hour a week drop-in center for people and

31:05 We ended up adding Case Management Services food pantry education Prevention Services. And now the living room has been around buddy for 24 years at 6 weeks.

31:21 Olivia's been around

31:26 And here I was director of it for 7 years.

31:33 Funds really started to dry up and I had funds for for Grants. What I didn't have funds for it was administrative costs. It's really funny. People want to feel really good when they make donations to specially not small nonprofits so that your mark the donation for food for this but nobody ever said for the audit that you have to do for the PG&E bill. You have to pay to pay for the accountant or bookkeeper or the insurance.

32:09 Does look kind of funds we didn't have fortunately WestCare California, which is a large organization substance abuse providers and they provide services. They stepped up to the plate and took the living room. / they have Deep Pockets the many times since what was that 2003 2002-2003. They have had to rescue the living room. They've had to step in and and provide funds keep it for me, but they have a commitment to HIV AIDS and making sure the services are available.

32:51 And still there I every year. I still I still MC the AIDS Walk for the living room. I still have the biggest mouth in town and it's been a real privilege.

33:10 I think that I developed a shell around me and I stopped crying.

33:16 And in 97, I went to a friend's memorial service. What's the new medications were out people stop dying and when they did the balloon release remember breaking out into uncontrollable tears. I had to walk out and it was like a catharsis like everybody.

33:38 Died all over again.

33:42 We

33:46 Generation down

33:48 Of

33:50 Lgbtq people

33:55 I don't know realize that there's a whole generation gone. I'm the last one of my gay family left my last.

34:06 One friend passed away in September of 2019

34:15 And the rest are gone.

34:18 Restaurant it's a

34:22 Have the people you thought you were going to grow old with are no longer there.

34:30 You turn around and it's it's empty. I friends nothing. I don't have friends. But those long time friends that family that family that you had the score people.

34:45 They're gone, and I'm 69 years old, but I'm not 90s pecked that at 9 p.m.

34:53 Right age

34:57 You okay? Yeah, you stuck me with that last bit.

35:01 Well, you know, it's it's it's so true. I think that's that's probably why I want to tell my story. I think I want to tell the story because I don't I want the

35:14 Lgbtq youth for those coming up to know.

35:21 That we struggle to me.

35:23 I remember telling my parents I'd rather die telling my parents that we were gay and

35:31 You know.

35:33 My dad saying

35:36 You better and I want you both to know that we love both of you. But if you don't hear from us for a while, it's not because we don't love you cuz it's going to take us a while to understand this.

35:51 I see so many people cast out by their families and life in my car is turned off be so accepting and I bring friends from San Francisco and they'd stay at my parents house. And it's all your parents are great. Wish my parents were like that. And if you're if you're lgbtq, I know you've heard the stories and maybe you'd experienced. It family's family. Love is love.

36:21 Oh and

36:24 The biggest thing that we can probably do in the lgbtq community is accept each other.

36:31 You said gay men and lesbians did not accept each other and there was a time.

36:36 Gay and lesbian stepped up to the plate there when you gave me and we're getting sick.

36:44 That's really lovely. We need more love in this world. And we need to know that if it's even if our families reject us that we can be there for each other tears and family. Thank you. I want to thank you for sharing your narrative and I feel like it's important so many ways but it one big way is that people like me who didn't have the chosen family will have a narrative and say, you know, I'm not important and I can relate to this narrative and it's so thank you. It's rock. We're all okay. God doesn't make any junk.

37:29 Thank you. You're welcome. How are we doing?

37:35 You know I ate I think it's just

37:38 So great to be able to talk to you in and be able to relate these stories and I hope that you'll be able to pass on your own story at some point two people.

37:54 I will and I'll make sure that they hear yours too and many many more people are telling the stories and willing to tell their stories and

38:11 Other people I think find find a way to relate to those things some

38:24 So I'm just very happy that I'm able to tell my story. I'm very happy. The story corpse came to Fresno.